Fecal Microbiota Transplant Questions and Answers

Question 1: What are the main requirements to be a good Fecal Transplant Donor?

Health: I suggest the Fecal Microbiota Transplantation Workgroup criteria as the baseline for determining a good donor. That means no infectious disease, autoimmune disease, gastrointestinal disease, atopic disease, blood sugar dysregulation, mood disorders, or chronic pain, and lab tests showing the donor to be negative for blood and fecal transmissible pathogens. I’ve had patients decide to skip the lab tests when they’re using a parent, child, or spouse as a donor and they feel confident that they don’t have risk factors for any of the things the lab tests look for. In addition, you’re looking for someone who has a formed bowel movement every day or almost every day, and who hasn’t had antibiotics in at least 3-6 months. Ideally you want a donor who has generally clear skin, healthy energy and activity levels, and a good disposition.

Age: Conventional wisdom is that kid colon flora resembles adult flora by age two, and that colon flora diversity declines in elderly populations, so the best donors will probably be between the age of two and sixty-five. That being said, I’ve seen people benefit when using FMT donors younger than two, and there’s no evidence (just speculation) that individuals over the age of sixty-five won’t make effective donors.

Family members: I’ve seen people with Ulcerative Colitis, C diff colitis, and other conditions benefit from family member donors and unrelated donors. No clear evidence yet, but my guess is that it doesn’t make a difference.

Blood type: There’s one paper (http://www.biomedcentral.com/content/pdf/1471-2180-12-94.pdf) suggesting that people who have blood type “B” or “AB” may have a significantly different gut microbiome than people who don’t, so in my practice I’ve recently started trying to pair donors and patients with compatible blood types, but it’s way too early to see if that’s making any difference.

Age is really an unknown, but clearly infants are ‘different’ from adolescents and adults, who are typically used, although more by convention than based on science. Likewise, family members are often used as they are willing confidantes, but whether that’s more effective is unknown. Intimate partners are generally the most desirable, in that if they do have an undiagnosed potentially transmissable infection, they’ve essentially already shared it, and it’s quite unlikely that a transplant exposes the recipient to any additional risk.

Question 2: When treating C-difficile, how many and at what intervals are fecal transplants necessary?

The way I use that information clinically with C diff colitis patient is to give an initial FMT infusion, and check in 24 hours later. If someone is 95-100% better, I tell them they’re done. If they’re less than 95% better, we do a second infusion, and check in again after 24 hours. I’ve had to administer as many as five infusions that way.

Extensive data supports that one transplant is sufficient (and effective) in the large majority of C diff patients. There’s no data (but probably no need for such data) on multiple transplants in this population. Most series have used a single implant, from a single donor, most often an intimate partner, with ‘cure’ rates of >90%.

Question 3: What is the most effective way to deliver a fecal transplant? (Colonoscopy, enema, endoscopy etc..?)

Great question. The comparison chart (http://cid.oxfordjournals.org/content/53/10/994/T2.expansion.html) from the meta-analysis I mentioned in the previous question does it’s best to answer that question as well, and enema came up as he most effective technique! I want to emphasize here that the whole meta-analysis only looked at 317 patients, so I’m not convinced that enema-delivered FMT really is tremendously more effective for C diff colitis than colonoscopically-delivered FMT is, but it certainly doesn’t seem LESS effective.

Since I’m writing these answers for “IhaveUC.com” though, I want to address efficacy for UC. This question has never been examined, since there are so few people treating UC with FMT. The main doc providing FMT for UC is Thomas Borody, an Australian gastroenterologist, and he uses a colonoscope; he only published about his findings in 2003/2004, at which time he reported a 50% effectiveness rate, although he’s told me he’s seeing FMT be effective for UC about 90% of the time now. In my practice, I’m seeing no benefit in about 10% of UC patients, partial benefit in 60-70%, and complete effectiveness (no symptoms no meds, and eating a varied diet) about 25% of the time. That’s not nearly as good as Dr. Borody is reporting, and I wonder if it’s because we are reporting our successes differently or because he is administering via colonoscope.

I’ve seen complete turnarounds of UC (people with 10+ bloody BMs/day, some people with UC for decades) using enema-delivered FMT, but I wonder if some of my patients who improved partially (symptom free as long as they avoid certain foods or stay on certain meds, or off meds and eating a varied diet with most symptoms gone, but still experiencing at least one symptom) might have improved more with colonoscopically-delivered FMT, so I’m training in colonoscopy, and hope to be able to offer it to patients in summer of 2013, although it might be longer than that.

Also not definitively known, and there’s plenty of data supporting quite high cure rates with all three routes. Clearly, as a gastroenterologist, colonoscopic administration is available to me, and intellectually makes sense. Upper tract administration (NG tube or endoscopy) seems to have modestly lower cure rates in a global (not statistical) analysis, and is esthetically unappealing to many, as well as potentially exposing the infusate to acid, bile salts, pancreatic enzymes etc, which could have unknown effects. Enema cure rates seem quite reasonable as well. To a man with a hammer…..

Question 4: Can fecal transplants work for people who have a j-Pouch?

There aren’t any cases in the published scientific literature of using FMT for people with a J-pouch, and I haven’t used FMT anyone with a J-pouch in my practice either. However, since pouchitis can respond to oral probiotics (http://www.ncbi.nlm.nih.gov/pubmed/12730861?dopt=Abstract), it seems likely that changing the pouch microbiome with FMT has potential to benefit people with recurrent pouchitis.

unknown (to me, at least)

Question 5: Is it recommended to take antibiotics prior to starting fecal transplant therapy?

Another great question. Dr. Borody. who’s the most experienced doc in the world at using FMT for UC, gives antibiotics before FMT for every UC patient. The idea makes sense: try to decrease the amounts potentially harmful bacteria we don’t want in there so they are more easily outcompeted by the healthy bacteria that we’re introducing with FMT. Since Dr. Borody uses them for all his patients though, I didn’t know before I got started how important of an ingredient that was to the success of his FMT infusions. I’ve prescribed Dr. Borody’s protocol (metronidazole, vancomycin and rifampin) to some of my UC patients before FMT, used different anti-biotic pretreatment protocols for others, tried herbal antimicrobials with some, and used no antimicrobial pretreatment with about half of the UC patients I’ve tried FMT with. I’ve seen successes and failures in each of these groups, and although I haven’t carefully analyzed my own clinical data yet, I don’t think I’m seeing more success in the antibiotic pre-treatment group.

There aren’t any studies that have looked at this in humans, but there is one group (http://genome.cshlp.org/content/20/10/1411.long) who has studied this in rats: they did FMT with a number of rats, and used a very accurate DNA-measuring technique to look at their colon flora before and after the treatment, while comparing it to the colon flora of their donors. They also gave half of the rats antibiotics first. They concluded that “antibiotic pretreatment counter-intuitively interferes with the establishment of an exogenous community.”

In my practice I’m willing to prescribe the antibiotic pretreatment (since it’s part of the world’s most respected protocol) but I encourage people to consider trying it without the antibiotics, since of course those have some risks of their own.

I don’t believe so, although there are many opinions on same, and little data.

Dr. Borody initially reported a 50% success rate in using FMT for a mixed IBD and IBS population ( PDF File Link to this study), and more recently has told me in conversation that he’s seeing complete resolution in 90% of the UC patients that he uses FMT with, as long as they are able to re-infuse for long enough. In my own practice (treating about 40 UC patients with FMT in the past year) I’m seeing no benefit in about 10% of UC patients, partial benefit in 60-70%, and complete effectiveness (no symptoms no meds, and eating a varied diet) about 25% of the time.

For Crohn’s, a lot less is known. Dr. Borody has reported using FMT with one patient with Crohn’s colitis, who became symptom free without meds or dietary restrictions for 18 months, then relapsed. I treated one patient with Crohn’s who had previously had most of his colon and parts of his small intestine resected. He did not see any benefit from FMT.

Also still very limited and early data. It’s certainly plausible that they might be, but as compared with the data for c diff, which to me is conclusive, this is still a very unsettled question.

Question 7: What might be some of the reasons that Fecal Transplants work for some people and not for others?

That is the million dollar question. I don’t know. For some people, maybe their colon bacteria are not the primary trigger of their autoimmune colon inflammation, and FMT will never work for them. Other people may be using a non-compatible donor. For people that it could work for but hasn’t, I’m starting to think more and more that persistence is the key, just frequency of infusions until symptoms are well-managed, then gradually tapering. Some people who don’t benefit when trying FMT without pre-treatment via enema may benefit with antibiotic pre-treatment or or colonoscopic delivery.

host biome? donor biome? technique? moon phase? (ie, who knows)

Question 8: What are some of the risks involved with trying Fecal Transplant Therapy?

I always tell people that the major literature reviews on the subject call the side effect profile of enema-delivered FMT from a properly-screened donor “none” or “negligible.” That being said, FMT isn’t approved by the FDA for any indication, and the biggest review to date has only included 317 patients, so there’s a lot we don’t know. FMT delivered by naso-gastric tube or colonoscope carries the small but real risk of perforation, peritonitis, or bad reaction to anesthesia. There are a list of health problems we associate with colon flora that currently make us exclude donors (asthma, eczema, IBS, colon cancer, any autoimmune disease) but it could be possible that there are other conditions we don’t know to exclude that are associated with gut flora, and that could be transmitted.

We haven’t really seen much morbidity or harm, but it’s still early, and still unknown. There is certainly a theoretical risk of infection transmission (Hepatitis C, for example, has been transmitted via colonoscopy, ostensibly a much lower viral load), although I’m unaware of any reports to date. Also, we’ve really got no clue how durable the ‘biome transformation’ is, and if it is durable, could that have adverse immunologic or metabolic consequences? it absolutely could, but we just can’t tell yet.

Question 9: What costs might a patient expect to incur if insurance did not cover Fecal Transplant Therapy?

If they live with an eligible donor, and they are willing and able to do the preparation and administration themselves, it can cost under $100 for a blender, some enema bottles, a strainer, etc. If they want colonoscopic delivery (from Dr. Lawrence Brandt in New York or Dr. Alister George in California), it’s just the cost of the colonoscopy, which I think is a thousand or two.

If someone with C diff colitis does not have a donor, Dr. Alex Khoruts in Minnesota and myself (Mark Davis in Oregon) maintain fecal slurry donor banks form pre-screened donors. I also use my donor bank to treat patients with UC. People with UC who use my donor bank and are able to self-administer the enemas pay $4,050 for ten days, plus $200 per infusion for re-infusions if they are indicated.

Very variable. the procedure itself costs might be minimal for enemas, certainly higher for colonoscopy. The costs of donor screening can be substantial as well. the disposable blender from target is the least of it!

Question 10: I have dysbiosis of the large bowel and chronic SIBO in the small intestine. Would a fecal transplant help rectify the colonic bacteria in both the small and large intestine?

Great question! I used to tell people routinely that I didn’t think FMT could help SIBO or other dysbioses of the small bowel. Now that I’ve started having some success treating patients with chronic constipation though, I’m realizing that sometimes SIBO can occur as a RESULT of large bowel constipation and other dysbiosis, and once you clear up what’s going on in the large bowel, you can see small bowel problems resolve as well.

completely unknown

Question 11: If you tested positive for C-diff, would you first take antibiotics to treat the C-diff, or would you opt to try fecal transplant therapy first?

I personally would definitely try FMT first. Most docs who use FMT for C diff keep their patients on doses of antibiotics large enough to keep them sypmtom-free until they infuse the fecal slurries, but I did treat one patient who was not on any antibiotics at the time who had a complete resolution after FMT.

Certainly the national standard of care is currently first to take antibiotics, and apply transplant to multiply-recurrent patients. SHOULD that be the standard? Would i personally do differently? At this point, I think it is a rational and data supported standard, and no, I probably wouldn’t personally try transplant first.

Question 12: Is the medical community expecting for fecal transplant therapy to become more popular and accepted as a viable option for more GI related health problem? (Besides C-diff)

Yes! The main reason that many gastroenterologists are not routinely performing FMT is that their hospital or clinic administrators will not allow them to perform a procedure that has not been shown to be safe and effective in a randomized controlled trial. There are currently two trials of FMT for UC underway, one in Toronto for Canadian adults with UC (http://clinicaltrials.gov/ct2/show/NCT01545908) and the other in Michigan for children with colonic IBD (http://clinicaltrials.gov/ct2/show/NCT01560819?term=NCT01560819&rank=1). The trial for adults is giving one enema-administered infusion per week for six weeks, and the trial for children is giving five infusions within the span of ten days. Now, neither of these duration/frequency protocols is what I would have chosen, but I’m hoping they see positive results, because if they do I expect to see many more gastroenterologists in the US and world-wide performing FMT for UC.

Absolutely. Huge buzz from this and the human biome project. all that’s left to figure out is, you know, well, who, what, why, when and how? ie EVERYTHING! it’s an exciting early stage and it will be fascinating to me to see how this all evolves over the next decade.

I’ve been exploring some other untested ideas, some drawn from Dr. Borody, some from the naturopathic community. Sometimes I recommend a short course of prednisone just before and during the infusions period, and I usually recommend DHEA with prednisone. For UC patients I usually suggest a period of low to no fibre before starting FMT, then introduce fiber foods starting with the infusions. If people are using antibiotics or other antimicrobials I suggest using a bifilm disruptor–I most often use NAC.

(On behalf of the iHaveUC readers and Colitis Patients of the world, I’d like to send a Huge Thank You to Dr. Davis and Dr. Neil Stollman for taking so much time to answer all of the user submitted questions. And to everyone reading, please note that Dr. Davis volunteered his time for this Q&A session and has received no monetary compensation from the iHaveUC.com site. Dr. Davis wrote another informational story on the site back in November of 2011 which you can also read via this link: Fecal Transplant Info which has quite a few comments and additional answers.

Also, just so everyone knows, Dr. Neil Stollman is my personal GI doctor – and an amazing person too. I’ve written about him before, and he appeared on the video I shot a few months ago sharing my colonoscopy results. I can’t thank him enough for participating here as well. Like Dr. Davis, he has received no monetary compensation from the iHaveUC site for his time and effort in participating with this Fecal Q&A project.)

Like always, please feel free to leave your comments below, and feel free to share or forward this valuable information to anyone else who might have questions about this type of therapy. Thank you as well to everyone who submitted your questions. I tried my hardest to include all of your questions that I felt would benefit as many people as possible, however there were some very specific questions that some of you wrote which were not included (and I apologize for that). If that was one of you, post your questions in the comment area below with the hope that an answer will follow.

-Adam Scheuer

PS: here is a video which might answer some more of your questions that you still may. It focuses specifically on Fecal Transplant Therapy for C-Difficile:

Update Recent News (as of January 2013): And if you just really have not gotten enough about Fecal Transplants and C-DIFF, there’s some more news about the effectiveness here in a new “Fecal Transplant Microbiome Breakthrough Study“

105 Responses to Fecal Microbiota Transplant Questions and Answers

ah such a great post, adam! i’m so glad i got to read it. i tried 8 fecal transplants via enema but didn’t see any improvement- actually went from 7 bms a day to 15-20 bms. i always figured it was because my donor and i weren’t compatible. i know we were both blood type A, but we had very different diets and i think our gut bacteria just didn’t mesh. it would be interesting to see if i could benefit with a different donor or even through colonoscopy. i might try it again someday if humira doesn’t work or no new meds/therapies come out. it’s definitely a gross procedure for everyone involved but UC people get desperate!

Wow thanks for this. I am getting my FMT tomorrow in hospital. I’m soooo excited! I have to make the preparation at home…my doc gave me most of the directions…but I will be going under and getting it via endoscopy…pumped thru my small intestine. I read in a recent article that a group of researchers are working on synthetic poop. What was most interesting was that they don’t let the poop have time to mix with oxygen they say it kills lots of needed bacteria…I wonder if this may be a reason why this sometimes does not work…

Glad to read this as my doctor tried to convince me it was NOT available for UC. i’m going to rub this in pretty good… I”m very annoyed with her, needless to say. She never even had me checked for C-Diff until i demanded it.

Before I forget, I’ve had UC for 10 yrs and have used ZYFLAMEND LIQUID for 8 yrs which saved my life.
I’m still pursuing the FMT, of course.
When using Zyflamend LIQUID put it under the tongue, wash it down with any drink you like, (as it tastes bad) and use it 2x a day initially. It will work IMMEDIATELY. I now use it 1x a day. My repeat colonoscopy was the exact same 8 yrs apart.
Zyflamend can be looked up on the net, new chapter makes it, and is sold world wide. I was very lucky to find it. Never been on medications, never changed my crappy diet either. Its also inexpensive, and the side effects are, faster growing hair, and strong nails too ;) Aside from all the other benefits.

PS: I don’t think FMT is gross, that is a stigma that needs to be eradicated. I think as a (retired) dog breeder and seeing dogs eat feces out of instinct, they know something is missing in their gut and simply are replenishing it. I never stopped them from it, and they don’t always do it, so there must be a reason for the occasional munching on other dogs’ poop.

Thank you so much, Adam for posting this. I talked with Dr. Davis about a year ago about FMT and although I never technically was a patient of his I was amazed at his knowledge, expertise, and passion for healing. He truly is a pioneer in this area (as is Dr. Borody) and I am so glad that more people are finding out about this therapy and am greatful that there are people out there like Dr Davis.

Wow…fascinating and still the “ick” factor especially with the thought of the home kit and the added visual/sound effects of the blender!! That is definitely not my power smoothie! But hopefully someone’s…keeping my fingers crossed for the nonfecal advances…that sounds pretty awesome to me-probiotics essentially directly where they need to go?!
“Poo is a zoo!”Dr.B. & “10% human; 90% poo!” Great quotes, promising research…
Thanks Adam and Dr. Davis….making my power Smoothies will never be the same! :-) :-) Shelly

shelly, when i did FT, i bought a separate blender for my poop solution. there was NO chance i was gonna use my vitamix haha but yeah, it’s definitely the grossest thing i’ve ever done. the smell is what gets you the most so having open windows and wearing a mask is a MUST.

:-) so sorry…kudos to you for trying, but sorry it didn’t work. I think a hazmat suit is in order! I think the doc./nurse or whatever she was in the video almost looked like she was making a cringing face!

When do you start humira? Make sure you read EVERYTHING about it. You probably read the post Adam did a while back on its approval? I’m not a fan/allergic, but I wish you tons of luck. I always kept benadryl on hand and write everything down!

I am using herbs, probiotics, omegas, enzymes, vit d, aloe, spiruten and about 99% SCD- trying to get out of my second flare of being off meds for over a year! This one has been a tough one…but Keeping my fingers crossed and hoping to write a new positive story..,.almost have the bleeding stopped after about 3 months so there is great promise…I’ve been meaning to write you…so great “coincidence”?! :-) hang in there…
Best, Shelly

hey shelly! i hope you get out of your flare soon! that is what i asked for christmas this year- well, mainly to magically wake up and not have UC. that would be AWESOME.

as for humira, i faxed my nurse my TB results about 2 weeks ago and she said she’d request humira from my insurance as soon as i did that. still haven’t heard anything. it took about 3 weeks for me to get remicade so i figure it’s around the same wait. but yeah, i read adam’s humira thread and wanted to cry ahhh just gotta hope for the best. if i get bad side effects, i’ll just stop it. that’s what i’ve done with everything else and so far i haven’t had any long term effects.

what enzymes are you on? i got some new digestive enzymes by klaire labs but im waiting to take them after my xmas party tomorrow. i didn’t want to be all gassy or crampy if the enzymes can do that.

Hi Joanna,
The enzymes are Zypan…from my chiro. Same with the herbs. Plus, as you probably know, I take 4g of Lovaza, and Mega doses of the vsl 3 prescription strength…3-4 packets of 900 Billion!! I wanted to be more systematic, but as usual the flare came on fast and furious. The true SCD is a bit torturous! Found I had to give up all dairy at least for now. I know you had done some herbs…were those from a naturapath or? My chiro practices Chinese medicine-I can let you know what those herbs are if you want. I still have a long way to go…healing is VERY slow, but hopefully will continue after 30+ years no more toxic meds for me and the rest don’t work anymore or allergic!
Oh, no j pouch where I live so added stress…great for uc!
Enjoy your party!

hey shelly! wow that is a lot of probiotics you take. the most i ever did was 2 packets of VSL DS a day but it was just ridiculously expensive. my insurance doesn’t cover it so a 20 day supply was $186. i just couldn’t afford it at all. i didn’t even notice a difference while i was on it or the regular VSL either. i tried enemas with it but no help there.

yeah, i got the herbs from a naturopath. i can’t remember what supplements she gave me. i threw all of them away because i ended up in the hospital 3 days later. i was going about 30x a day after i started them.

right now, i seem to average 4-5x a day which is fine with me. still need to fix some things but we’ll see what the humira does.

I have seen Dr Borody and other doctors at the Centre of Digest Diseases, I had a colonscopy to confirm see if I have UC or crohns and a blood test to see if I have mycobacterium paratuberculosis which is the bug they believe is causing UC / Crohns in peopole. apparently the blood test is new and has never been able to be detected in humans. I am currently taking a course of antibiotics rifaximin(which is made by a compounding chemist) and flaygl, also prescribed Acetarsol suppositories(made by compounding chenist as well). I was told to continue taking my current medications methotrexate injections and prednisone as well I have only been on the antibiotics for 2 weeks now. I asked about FMT and was told they like to ensure that the colon is healthy before doing FMT as the good bacteria will adhere to the colon and gives a better result I also asked if I can get of the antibitoics and was told lets wait and see how I go. I have another appointment in february to see how I am going and have to have another colonscopy in 6 months time. the only problem is the mecications is very expensive the rifxamin is $100AUS not to mentioned all the other mecdication I am taking so I so hope this treatment is the cure / remission I am hoping for.
regards to all
Anne

ALSO was told if these current antibiotics do not work they have 12 other antibioctics that can be used. Dr Borody also said he cured himself from constipation doing FMT he said he got the constipation bug and curred himself I was also told that one of his patients who has crohns is “cured” after FMT and treatment. I am hopefull that this is the cure for us patients with UC and or /Crohns and that it is a bug that is causing the problem and can be eradicated, like helicobactyer pylori which was once thought was caused by stress to some doctor found that it was a bug.
good health to all

Hi Anne, did you have Crohns or UC? And did you test positive for mycobacterium para tuberculosis? does Dr Borody believe that mycobacterium para tuberculosis is responsible for UC too? Does he treat UC with antibiotics? Thank you

Hi Becky appolgoise for late response to your questions. I have UC but when tested for MAP was told I had it. Dr borody advised me that MAP is only in crohns disease yet my scope he believes I have UC. so very confused about this.

I was treated with antibitoics for my UC I hope this answer your questions.

Hello Anne,
Thank you for your post. I am also trying to meet Dr Borody. My daughter if fighting the desiase for almost 3 years. She is 16 y/o, having a hard time to adapt to a diet , and friquent exams in school, trips to a doctors….
How re youdoing after FTM ? I hope it helped!
PleSe right to me :Stella.corp@hotmail.com

after doing FMT for 8 weeks my sigmoscopy showed that I have significant improvement in my colon, but I was still symptomatic that is still go 5=8 times a day sometimes.

since stoping treatment about 2 months now I get small flare ups. I think the FMT helps but you have to have a good donor and I think some people get good outcome others have to continue treatment. I also add link to another site were you do FMT at home
thepowerofpoop.com
I hope things improve for your daughter do take care.

Hi Anne, thank you for your update. My daughter is still on antibiotics Tifaxamin and Metranidaxol. For how long did you stay on antibiotics? Any specific diet yhat dr Borody suggested? How are feeling now? Please tell us more. I’m really scared for my daughter.
Thank you for all your posts!

http://taymount.com They do FMT for adults and children with a number of different digestive problems. They are in UK but have an affiliate in the Bahamas. I do not know them but they were linked on a paleo blog I follow. They say the way the feces is processed is critical and this cannot be done at home!!

I did a home fecal transplant about 7 weeks ago after being on the Specific Carbohydrate Diet since May. I had two horrible months of flare during September and October and then in November did the FT.

I have had normal bowel movements since then, with no gas, no cramps, no blood, no mucus. I highly recommend trying a fecal transplant. As horrible as I felt, I knew it couldn’t get much worse as I was down to 95 lbs.

After the FT, had no bowel movement for 2 days then it just got better and better – I am still eating SDC foods (no foods containing sugar, starch, gluten, wheat,) for now but I feel great – gaining weight too. It feel GREAT to feel normal again!!!

Terri, I’m glad you tried FT. We need to change he approach. My daughter is fighting UC for 3 years. My heart is in pain ti see her on heavy medication. Please tell us how do you fe today. I hope you are cured. Thank you

Hi Ella I was on quite a few different antibiotics that I tried. they finally had me on 4 types of antibiotics flagyl, (metronidazole) Rifampicin, pyrazinamide Vancomycin and arsenic suppositories I was already on methotrexate injections weekly and prednisone and stayed on these medications as well. I finally after being on prednisone for 18 months due to always flaring I was able to get of prednisone, I found this combination seem to help my stools became thin solid like and I was finally able to get off prednisone after being on it for 18 months. I saw DR BORODY only once then I saw a GP that worked in the clinic, the GP I sore suggested Diet wise to avoid gluten, grains, beans so a sort of a high protein low carb diet. a bit of rice was ok. I was also advised to eat a couple of Oregano leaves each day because of its antibacterial proprieties WHICH I did then I started taking wild oregano oil daily. Unfortunately I never had FMT though this clinic as although my stools were forming I still going up to 5 – 10 times a day. It has been suggested that I may also have IBS on top of my UC. Keep us posted I do hope you daughter gets well

Hello Anne. I listened to dr Borody interview on the youtube about chrons where he spoke about use of antibiotics for a long time,years and years. People completely healed on that regiment. He believes that all IBD bacteria originated which goes dormant and maltipies every few month s s he thinks that it’s important to continue taking it for long periods of time. I feel a little scared to have my daughter in antibiotics for such a long time , but I will continue. Since she was on Remicaid and she is still on it , but wasn’t repondung well to tx. May be you should go back on antibiotics? Is there any way that you could see dr Borody again? Ibs is treated by antibiotics with many rounds. Dr pimentels works has a lot on it. Try to read sibo.com as well. Let us know how you are.

Hi. I intend to do a home FT within the next week or so. However, my one good donor is on monthly injections of Testosterone. He is a pre-op transgender. Female to male. I was wondering if that could somehow complicate using him as a donor? What little I could find on the subject didn’t suggest that it would. I just wanted a little feedback before I proceed. He really is my best bet. His general health, diet, and age(29, the same as mine), make him a good contender. Also, do you think I should have his feces tested to be safe(just in general). If so, how exactly should I go about that, and what might the costs be? Even an educated guess would help. One last question… Is it possible to freeze samples for home use? Taking the necessary(sanitary) precautions of course. Or would that kill/harm the bacteria?

All good questions Matt, I myself don’t have a clue as to answers for you there though. Good luck buddy, if you are working with a physician on this whole program, I’d be interested in what he/she would have to say about your questions as well. best of luck,
Adam

Thanks for the quick response. My doctor actually knows less than I do about this subject. A lot of doctors don’t seem to know much about this area. And what they do know, usually isn’t beyond what I’ve learned through diligent research over the past six months. Even when she pursued it she couldn’t find basic nutritional information for a colitis diet(which I found easily). But I do intend to run the rest of this by her and work out the details. Even though I may be teaching her more than the other way around. I will keep you posted if any useful information comes out of this. Thanks to people like you my colitis has become more manageable. I really appreciate what you’ve done.

I would love to know the answer to this, as well. I have no remaining colon, however, but an ileostomy. Breath test came back a flatline; Dr. Mark Pimentel said “there’s no doubt you have SIBO.”

My Crohn’s has been in remission since 1992, when I received my ileostomy. Since then, it’s been candida, bacterial overgrowth, leaky gut, inability to tolerate oxalates (lots of abx over the years) and probiotics, and doctors telling me I need an antidepressant. I now tolerate three foods.

Hi all I thought I let you all now I’m currently participating in a double blinded FMT trail. This trail goes on for 8 weeks, I’ve had my first infusion yesterday via a colonoscopy, in hospital then I give myself an enema 5 times a week I have been given frozen enemas which I defrost prior to giving myself my own fmt enemas now as this is a double blinded trail no one knows if I am being treated with the placebo or the fmt infusion, but after 8 weeks I will know if I have placebo I am given opportunity to go on the fmt treatment which, means that another 8 weeks of infusion s, I will let you all know how all goes and keep you all updated

hi after 8 weeks of trail I was on the donor FMT I found some improvement less bleeding and stools were firming after doing a flexi cope my colon was from a UCIS score of 4 to 1 but I still was symptomatic that is I would still go up to 6 times a day which is better than when I started doing the trail as I was going 10 – 14 times a day. Yes it helped but I think it depends on your donor as well I found that of the different types of donors I notice certain donors FMT seem to work better for me. I also notice my diabetes improvement as well. unfortunately the trail finished. so I was no longer doing home FMT. I continued to be up and down and would have flares then settle down again. recently just before Christmas I started to flare again so now I am waiting for infliximab infusions to be approved so I can start going on to this.

Hi
I am from india . Hav been digmosed with mild crohns. I askd frm my doctor abt fmt. And he reacted as if i hav asked for smthng which is impossible. He made fun of me and said rhat do not listen to illeterate people.i am so disappointed.
However there is one more doctor is ready for this. But i am scared as it is not being done in india and i vl b the first one. I dnt kno i should go for it or not. Any suggestions…….

If I was you, I would go to PubMed and do some research on FMT there and read some of the studies. I would think there is a good chance that a study on FMT was completed in India (maybe not, but there’s lots of good stuff happening in India, so a decent chance and worth the time.)

Then, if there is, try to make contact with the researchers who submitted the study, the contact details are usually pretty easy to figure out if not they are not there listed on the study itself. Maybe those folks would have some contacts of who you can contact about moving forward with this if you want to speak with some physicians about FMT. That is how I would approach it.

Hello preeti
I am also from India and looking for FMT but it is very difficult to find a doctor who perform this in India. My doctor is saying that i am crazy and should not think about it. Its impossible to make them understand about this.

Hi, I too am from India, down south, Kerala. There is a hospital in Kochi run by a famous doctor who is specialised in Gastro-Enterology. The hospital is Lakeshore Hospital. I had called them last week asking for FMT and they told me they are testing it and would only be able to answer further questions after a month.

Hi swapna,
I m having fmt with Dr Ajit Sood..
Appointment no are 01612301749 for his home clinic which is 100 mtr from hospital and 9317792080 for hospital appointment of Dr Sood.. These phone lines opens for some hours only.. Try every hour, if switch off..
His personal number, I will give u in some hours but don’t know if he ‘ll have time to talk.. I never called him on his personal no.. He is very helpful and soft talking doctor.. U can ask anything to him

Thanks Deepak, for your update 7 yrs of active UC with me now completely lost myself to it. I am in Hyderabad dont know how I can manage to reach them and also not sure if FMT can help me. still in a bad flare currently. I pray for everybody to find relieve from UC. religiously follow medication and diet which suits my advise to all till we can find a permanent cure for it. request all to share your experience in dealing with UC to spread awareness and help each other.

Hi Mirza , I suffering from UC since April 14. Presently on mesacol but they have stopped working. I asked Dr Seth for FMT but he refused due to their hospital protocols. I prefer FMT coz it is a kind of natural process and I know people who stopped all medicines after this therapy. I am scheduled for colonoscopy on 25, after that only Dr Seth will decide my medication course. If they allow I will go for FMT first before starting steroids. Let’s c. Well you can speak to Dr Seth over phone and discuss your situation. He is pretty cool guy and surely will help u out.

Just sharing some of my experience with all, along with allopathy treatment some extra options to ease symptoms of uc bael powder helps by reducing mucus and number of stools , boswillia serrata(yasti muddu ) helps minimize flare severity , licorice can be taken temp and helps a lot , turmeric helps in healing wounds , liv52 tablets to check liver health should be taken 1 month to see positive results as per one successful UC patient no side effects in any of these. all these can be bought cheaply from himalaya herbals . sticking to proper diet is very important. Aloe vera gel or juice also benefits some people.
be cautious and avoid major flare as no supplementary treatment can relieve you other than steroids.

Hi swapna, Dr. Seth is my GI presently. I spoke to him for FMT but it seems hospital has some norms to follow, so I was suggested to wait more because I am a patient of mild UC on mesacols presently and in remission. If disease is uncontrollable with steroids, then only they do FMT. I asked him its success rate, amazingly, more than 50 % of his patients are doing extremely fine and stopped taking all medicines. Few with little improvements and also people with no results. Overall he is a nice chap, atleast listen to us patiently which is very crucial when u r in symptoms. ☺

Yeah right I met Dr seth this Monday only.. And even I am out of contention for FMT.. They hv very strict criteria right now in which they are allowed to take 10 patients only.
They have applied for 50 more patients with no criteria, everyone with UC can apply, permission for which may take 3 months to obtain

Hi vikas . Is dr. Seth treating crohns patients too with fmt. And you know what …i am tired of going to a no. Of different doctors and asking for fmt nd they try to giv me azithroprione. I jst want to see a doctor who can giv me the treatment i.e. fmt. If anyone of you have found a doctor who can do fmt for crohns jst do let me kno.
Thank you guys .i really wish i become the same person i was b4 and enjoy my life.

I dont know if dr ajit sood is performing fmt for crohns..but surely he is doing it for UC..
AND WE All wish the same for ourselves..its long shitty 6 years since my college,never thought i can hv any disease like this.
Both my studies and career got screwed bcoz of this

Fmt capsules are still a long way to go. Because capsules willl be available only to c.diff patients, and that too will not ne available in india..so ,capsules will take years.
Dr avinash seth can take only 10 patients for clinical trial,out of which 7 patients he already took..no chance there.
Dr ajit sood ,dmc ludhiana is the only way to go

Ok .thank u for so much information . I can understand the situation when u kno so many doctors. I wish that the year 2016 brings the right and effective treatment for every sufferer. One last question ….are u taking fmt treatment from dr. Ajit sood.?

Yeah i m taking treatment from dr sood..i have 4 fmts till now..
At first and second i got worse but now i am starting to see some benefits..fingers crossed..
They are doing fmts through colonoscopy only

Hi preeti,
I dint read ur last comment on 17th Jan, that’s why I dint reply
First time, u go there, he’ll ask to u to get admitted in hospital to perform some tests on u, costly first time. I stayed for five days and they did 2 fmt colonoscopies but the laxative powder before colonoscopy did more harm then fmt did good.. Ask doc for pegvel powder instead of peglec.

He suggests 7 day gap till 4-5 fmts then 15 days, then a month depending upon ur improvement

Take amit Dharmatma ‘s contact no, he arranges donor and Dr Vishwanath’ s no, he is junior doctor in colonoscopy dept, he prepare the sample for FMT
Call both of them 3 days before u go there,except first time.
No need to visit doc Sood evertime, he won’t be there at the time of colonoscopy. I visit him every time, his opd timings are awkward. 3 days it starts at 7 pm, 3 days at 10 pm.. Yesterday he saw me at 2 am

Yes. I am from gaziabad. Good to hear that u r doing well with fmt. Wish that u bcome medication free soon.
Yeah wanted to ask 1 more thing .how much he charged u for the first time for all the tests. And how much after that.
Actualy i m getng my treatment from a reputed hospital in delhi. But i am losing weight like anything .hav bcome so melnourished. I asked my doctors to treat me with fmt bt they said no even after accepting that this treatment works for many people. So i will hav to travel to ludhiana.

And if u can tell me what all tests he recommends….that vl b great coz i hav already got
Done a lot of blood work.

I don’t know If he recommends those tests or someone else, bcoz he visits once a day and other doctors working under him visits twice or thrice.. They just recommend your tests to nursing staff, and nurse’ll collect blood.. Cbc lft kft tft igg igm and some other blood tests, some stool tests, some urine tests.. Staying in ward costs 3k a day, private room 4900 a day. Staying in private room means u hv to pay extra for everything, tests, doctor fees..
You ask doctor that I want to stay at guest house in front of hospital and I’ll come and get tests done in hospital bcoz I need a personal washroom which u wont get at hospital ward.. I stayed at private room in hospital and it costed me around 60000 including tests. Take all your previous reports with u..

Hi ankur I did fmt 4 times there.. And I m now completely off steroids.. 8 mg prednisone daily dose for so long time left me very weak.
It’s been 5 months since my last fmt. I’ll resume
Fmt soon
Ankur u must give it a try, it gave my life back.
But remember
1.it took 3 months to show result. Infact after fmt I feel very ill because of colonoscopy, stomach pain, painful diarrhea is very common after fmt.
2.keep it doing even if u feel worse. Everyone told me to stop doing fmt but I dint..
If u need any help my contact no 9873393107

Hi Vikas,
I Read ur reply today..I am happy that ur r in remission through.Can u plz confirm that FMT is capable of making pathological changes also(restoring colon back to normal as it was before) ??
I was reading an article on Steam cell transplant..It is also emerging therapy for treating UC with high sucess rate of getting cure…

We are currently not in a position to travel so will hold till things get stable for travel. We are in US so cant make the big travel now. I’m on Facebook, shalini_scd ping me for more details. I spoke to dr.avinash couple of times he said he can do the fmt just waiting till we are ready for travel

Hi preeti..
Yep m still going there at a gap of 3-4 months..
M feeling much better now.. Left steroids and azoran.
Now taking only mesacol which doesn’t hv any known side effects.. Dr sood will review mesacol dosage this coming visit.. May reduce it

HI all, I am a 24 year old male who is currently undergoing fmt treatments for the past 6 months. This is a part of a clinical trial in western Canada. I have had severe ulcerative colitis since I was 17 and have tried every researched and non researched drug which include: remicade, humira, vedolizumab, Mezovant…all which have failed to help. However, since starting fmt I have seen a change in health for the better. These changes include: formed bowel mvmts , less bloody stools, increase energy and positive mood change. I currently take 2 treatments per week for the past 6 months…I would say my health has improved but I am still not nearly as close to ‘normal’ as I would like. This has opened the opportunity to put my added energy to work and adopt new healthy habits and strive for a better lifestyle which include healthy eating, prayer and meditation, daily exercise, and reading and learning. I hope the combination of these will help get me back to normal and hopefully even super human!